During the television marathon, on 11-12-13 December 2009, Telethon will present a short film telling Charles' story.

In order to promote the film worldwide, Telethon has edited a new English web site version. On the web site you can have a preview of the film, listen to Elena Cattaneo, an Italian researcher funded by Telethon who studies Huntington disease, check for international patients' HD associations or read more about Charles Sabine on Intelligent Life, the quarterly lifestyle and culture magazine from The Economist.

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Telethon Italy is an Italian charity whose mission is to advance biomedical research towards diagnosis, cure and prevention of genetic diseases (http://www.telethon.it/).

Their fund raising depends primarily on a solidarity marathon presented on national TV channels every December and relies strongly on private donations. Since 1991, Telethon Italy has invested 300 million Euros in research and funded 2,200 research projects on 444 human genetic diseases.

Telethon Italy focuses on scientific research and does not offer healthcare, material assistance to patients or advocacy. However, Telethon is also involved in informing patients’ associations and in raising awareness on the scientific and social issues related to genetics and hereditary diseases.

LSVT Global specializes in the development of treatments for the speech communication and physical / occupational therapy needs of individuals with Parkinson disease as well as other neurological conditions.

• Download LSVT LINK Fall 2009

On 8 December 2009, the Agency will officially launch a new visual identity, comprising a new logo, new colour chart, new typography and rebranded materials based on these elements.

The new visual identity is part of a wider effort to improve the quality and consistency of our communications with partners, stakeholders and the public.

In addition to this, the European Medicines Agency, will no longer be referred to as EMEA.

The decision to change this reference is as a result of confusion in the acronym, firstly because it was decided it did not accurately reflect the Agency name ("What does the second 'e' stand for?") and secondly because it is an acronym widely used in the business community to mean ‘Europe, Middle East and Africa’.

• Read full Press Release (30 November 2009)

With a stronger corporate identity, this comprehensive website combines all Alzheimer Europe's previous sites (Alzheimer Europe, Dementia in Europe and conference website) into one, as well as containing new information on:

• Alzheimer Europe –who, what and where we are
• Dementia – the different types of dementia as well as easy to use A to Z list.
• Living with dementia – tips for living with dementia from a carer’s or person with dementia’s perspective.
• Policy in practice - the work of the European Alzheimer’s Alliance, developments on European action on dementia, Alzheimer Europe’s opinions on different issues as well as country comparisons
• Ethics –discussions on some of the ethical issues which are at the core of caring for, and treating people with dementia. In addition, there is information on the newly-formed Ethics Network
• Our Research –the results from our latest European Collaboration on Dementia project are available as are details of the Dementia Research Observatory which Alzheimer Europe is developing
• Conferences – details of past, future and the forthcoming 20th Alzheimer Europe conference which will be held in Luxembourg
• News – the most up to date information on Alzheimer’s disease and dementia as reported in the news
• Publications – an e shop with details on Alzheimer Europe’s yearbooks, Reports, Care Manual, Children’s Book and magazine and newsletter

On 16 Sep 09, more than 400 Freedom Drivers from more than 20 countries rallied to the EU Parliament in Strasbourg. They were going, driving, lead by guides or seeing eye dogs. Regardless of their impairment, they were unified by one goal: Independent Living.

Eight demands were handed over by ENIL President Bente Skansgård to EU Parliament President Jerzy Burzek. Jerzy Buzek and Richard Howitt said they were committed to fight for the rights of people with disabilities. They also encouraged Freedom Drivers to keep lobbying their national MEPs to promote Independent Living in their countries.

• Read full ENIL Press Release (14 September 2009)

 

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The European Network on Independent Living (ENIL) is a European wide network of disabled people. It represents a forum intended for all disabled people, independent living organisations and their non-disabled allies on the issues of independent living and the independent living movement.

ENIL and its member organisations believe that full citizenship and human rights for disabled people will only be achieved through increasing awareness, challenging traditional services and positive debate throughout Europe and internationally.

James is 31 and lives in London when he’s not cycling round the world.

James has been riding over 100 miles per day, through wind, rain, temperatures of 40 degrees Celsius and fearsome headwinds. Despite suffering ambushes in Iran, battling illness in India and dodging projectiles

in Australia, James is now in North America for the penultimate leg of his epic journey.

Follow his progress via GPS tracking, blog and twitter updates at www.whereintheworldisjames.com James is on target to break the current record of 195 days, set by Mark Beaumont in 2008. His North American route has gone from Vancouver down the west coast, via San Francisco and Los Angeles. From LA hetravels to Pueblo, Colorado, picking up Adventure Cycling America’s Transamerica Trail to the east coast, a route that will take him through Kansas, Missouri, Illinois, Kentucky and Virginia before heading up through Pennsylvania to New York. James will fly out of New York to Lisbon for the final stretch back to London.

Parkinson’s Disease (PD) was first described almost 200 years ago, but what’s driving the disease is still unknown. Current routine treatments only target the symptoms; a change in approach is desperately needed. There are over 120,000 people with PD in the UK and millions worldwide. For the last two years, James has been a volunteer with the ‘What’s Driving Parkinson’s?’ research team, which is funded through the Psychiatry Research Trust (UK Charity No. 284286) at the Institute of Psychiatry, Kings College London. The research is headed by Doctors John and Sylvia Dobbs, who have developed a unique approach to the disease over more than ten years. The next stage of the research will cost ?5 million. James’s experience of this work is what has inspired him to take on this massive challenge. “Dynamic and unique research requires an equally singular fundraising proposition” says James. “If it were for myself and simply to break a record, I'd probably give up halfway round. If I succeed it will be because other things are more inspiring.”

James hopes to achieve his fundraising target through small amounts from a large number of people, using the internet and word of mouth to spread the news. James has cycled long distances before, his first trip taking him to the far north of Canada when he was 18. He has since crossed the Indian Himalayas and biked from Alaska to LA, but the challenge at hand is proving to be infinitely harder than anything he has done before, both mentally and physically.

As James’s says of the fundraise “We can do this too!”

You can learn more on his website www.globecycle.org and you can follow his progress on whereintheworldisjames.com and read up about the research on www.whatsdrivingparkinsons.net/about.html and last but not least, if anyone would like to spur James on with a donation, see justgiving globecycle ’donations’ link on any of these three websites

or

send to “ What’s Driving Parkinson’s?”, c/o Lesley Pease, Chief Administrator Psychiatry Research Trust, PO Box 87, De Crespigny Park, Denmark Hill, London, SE5 8AF

Thank you for your interest and help
Globecycle Team
On behalf of
‘What’s Driving Parkinson’s’ Research Programme

Contact james@globecycle.org to offer support or advice.

"

To Everyone at EPDA

Thank you so much for your help in raising awareness of my challenge – I’ve had an amazing response, from so many people, both those I know and those I don’t know so thank you for your part in this.

The total sponsorship raised for my Challenge was £4444.73, which I still can’t believe! The first half marathon in the vale of Belvoir was a nice steady race which I ran with a colleague as it was his first half marathon. We finished the race in 1 hour 44 minutes, which was an excellent effort for his first race. I then decided to run an additional race the following week around Derwent Dam with some friends from my running club - I must be mad!

However, the following week the London Marathon was a different ball game. I had developed a knee injury 4 weeks before the London but had taken things steady in order not to aggravate it. The marathon was such an amazing race and the crowds were unbelievable, but at mile 19 my knee became very painful and after that it just got worse and worse. However, at mile 22 I saw my brother and he gave me such a big cheer I just had to keep going. The crowds then pulled me the rest of the way and I finished in 4 hours and 2 minutes, but at least I completed the course. Needless to say, the last half marathon in Trieste was tough as my knee hadn't recovered, but the atmosphere was great and the sun was shining, so I can't complain!

I would really like to say a HUGE thank you to everyone who has supported me, whether it be with sponsorship, or with amazing support every step of the way. I know that I wouldn't have been able to complete this challenge without this support, but everyone's encouragement has been invaluable. Thank you so much, from me personally, but also on behalf of the charities I have run for - Cystic Fibrosis Trust, Parkinsons Disease and Diabetes UK."

 

On 14 July 2008 the NCPC welcomed the End of Life Care Strategy published by the Department of Health. As the charitable umbrella body for palliative care, the NCPC will lead on improving public awareness in death, dying and bereavement.

A year on, the NCPC considers that linking the Strategy to the implementation of the Darzi NHS Review has raised the profile and importance of end of life care.

NCPC is also delighted by the positive and energetic response that they have seen around the country to the launch of the new national coalition that we are leading to raise awareness on death, dying and bereavement.

Please call 020 7697 1520 or go to www.ncpc.org.uk for more information.

• Download NCPC full End of Life Care Strategy Press Release

Further information:

• Website: www.mareproject.eu
• E-mail: infodesk@mareproject.eu

• Download MARE June 2009 newsletter

Brussels, 5 May 2009 - EFPIA, the voice of the pharmaceutical industry in Europe, acknowledges the European Parliament’s adoption of a report on the welfare of laboratory animals. The report places the emphasis on scientific justification and ethical review as the basis for decision-making on animal studies. Whilst the decision of the Parliament as adopted represents a compromise, it is a step in the right direction. It goes some way towards a balance between the protection of animals, the reality of biomedical research, and the needs of patients.

• Read full EFPIA Press Release (5 May 2009)

LSVT Global specializes in the development of treatments for the speech communication and physical / occupational therapy needs of individuals with Parkinson disease as well as other neurological conditions.

• Download LSVT LINK Spring 2009

Worldwide, a team of researchers is evaluating an investigational medicine for the changes in thought, behaviour, and judgement that can occur with Parkinson’s disease. This study will assess the safety and effectiveness of an investigational medication in people with behavioural symptoms related to Parkinson’s disease.

About 280 people will participate in this study at approximately 65 research centres around the world. Participants will be asked to make 7 visits to the study centre. This will include six weeks of treatment and one month of follow-up. It is possible that at the end of the initial 6-week treatment period, the person you care for may have the opportunity to receive extended study treatment with the active investigational drug. The duration of this extended study treatment could be for as long as the study doctor believes the person you care for is benefiting.

Participants will receive at no charge:

• Monitoring of their health as it relates to the clinical study
• Ongoing study-related medical care by Parkinson’s disease medical staff
• Study medication or placebo (inactive substance)
• The opportunity to talk to a medical research team that understands what you and the person you care for are going through

Also, compensation for time and travel will be provided.

For more information contact:

UK
Website: www.ParkinsonsConcern.org

France
Contact a study centre for more information:

Hôpital Guillaume et René Laënnec, Nantes
02.40.16.52.86

Hôpital Purpan, Toulouse
05.61.77.92.97

CIC-UPCET Hôpital de la Timone, Marseille
04.91.38.75.63 ou 04.91.38.75.69

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About MediciGlobal

MediciGlobal is a firm assisting the study sponsor in finding Parkinson’s patients for this study.

Formally known as MediciGroup, MediciGlobal is a speciality patient recruitment - retention firm serving the clinical trials industry and is based in the U.S. and U.K. It's President and CEO, Liz Moench’s founding vision in 1991 was to create a company that addressed the primary cause of clinical trial delays: ineffective patient recruitment.

MediciGlobal launched its first patient recruitment programme for an oncology trial in 2001. The company continues to develop innovative patient recruitment-retention programmes around the globe.

• Read the online FAQ on the clinical study
• Download French language informational flyer

 

 

The project MARE is a joint initiative of EBA, an Italian consulting company operating in the sector of ICT and eInclusion and IAE (The Inclusion Alliance for Europe), a Romanian European Economic Interest Group.

This 18 month project that was launched on the 1st September 2008, is co-financed by the European Commission through the 7th Framework Programme (Accessible and inclusive ICT– Grant Agreement No: 224482).

MARE is the acronym of a market oriented study Market requirements, barriers and cost-benefit aspects of assistive technologies.

Further information:

• Website: www.mareproject.eu
• E-mail: infodesk@mareproject.eu

• Download MARE March 2009 newsletter

"

My target is to raise at least £2,000 for charity, split between three very special charities.

Amongst many special people that I know, there are three that I am doing this challenge for.

The first is an amazingly brave boy, Daniel, who has cystic fibrosis. Daniel is 12 years old and is a real inspiration to me. If I have a bad day (which generally isn't really a bad day in the whole scheme of things!), I complain and feel sorry for myself, and then maybe I'll go for a run to 'pick myself up'. Dan never appears to complain or feel sorry for himself, and he can't run away from his disease. Dan is an amazing boy, and I want to help raise money for research into Cystic Fibrosis. One third of the money I raise will go purely towards research into this disease via the Cystic Fibrosis Trust.

The second person I am running these races for is my Dad. He has border-line diabetes, and to be honest the thought scares me to death! My Nana had diabetes, and we lost her to this dreadful disease several years ago. So I am also doing this challenge in memory of her, along with my Grandpa and Grandad. Hopefully, research will one day provide us with the answers to prevent, halt, or reverse complications associated with this disease.

The third person who is very special is a lady called Silvana Mirella Rossi. Mirella lives in Pradamano, Italy, and she is one of the most hospitable and kind people that I know. She has Parkinson's Disease, which is a very cruel disease. She copes remarkably well and shows such bravery, and for this I want to run these races for her.

To pick just one of these charities would be impossible, and for that reason I am running for all three. The sponsorship that I gain will be split equally between the three charities, and hopefully we can make a small difference in fighting these three terrible diseases.

I would like to raise as much money as possible and to do that I really need your help. Please help me achieve this challenge and sponsor me to run these three races in 2009."

For further information and to sponsor Cara's Challenge visit www.caraschallenge2009.info

SAN FRANCISCO, CA (February 17, 2009) – The Medpedia Project today announced the public launch of the beta version of a technology platform for the worldwide health community. Harvard Medical School, Stanford School of Medicine, Berkeley School of Public Health, University of Michigan Medical School and other leading global health organizations, are contributing in various ways to Medpedia. The goal of the Medpedia project is to create a new model of how the world will assemble, maintain, critique and access medical knowledge. It will, over time, be a repository of up-to-date unbiased medical information, contributed and maintained by health experts around the world, and freely available to everyone..

• Read full Press Release on Medpedia launch

According to this important call, the European Union should promote pan-European research and collaborate in order to improve early diagnosis and the quality of life of people with dementia and their carers. Furthermore, the Declaration explicitly recognises the important role of Alzheimer associations and asks for their activities to be supported.

• Read full Press Release on MEP call

The Mental Capacity Act (MCA) provides support and legal safeguards for vulnerable people. This new user friendly guide for patients, relatives, carers, residents in care homes and for and health and social care staff provides information about the MCA and its impact on end of life care, and explains how people can use this legislation to express and protect their choices about their future care should they lose the capacity to make decisions for themselves, for example through advance care planning and advance decisions to refuse treatment.

Please call 020 7697 1520 or go to www.ncpc.org.uk for more information.

• Download NCPC Good Decision Making Press Release

"

Two years ago I was choosing what volunteer medical work to apply for. Looking back at it now, I feel very lucky that I chose what I did. I became an honorary research fellow at a Parkinson’s Disease (PD) research clinic based at hospitals in South London.

Unfortunately, it would require a sea-change in the philosophy of funding bodies to realise the potential of [our research on the role of infection in causing and propagating PD].

Over the last year my response to this has shifted from one of frustration to one of clarity; if we cannot raise the funds required quickly enough through conventional channels, then we must try something else! Dynamic and unique research requires an equally singular fundraising proposition.

In April 2009 I will set off from London to break the world record for cycling around the globe, with the intention of raising £1.8 million. This money will enable the research to proceed immediately to its next stage – a five-year multi-disciplinary groundbreaking programme into ‘Parkinson’s: What’s driving it?’

My route will traverse Western and Eastern Europe, Iran, Pakistan, India, Thailand, Malaysia, Singapore, Australia, New Zealand, Canada and the USA. I intend to break the recently-set world record for this journey by at least three weeks, by cycling 120 miles a day for 150 days. £100 needs to be raised for each mile I cycle.

We are looking for people who can support the challenge, either financially or through advice and assistance on route."

Contact james@globecycle.org to offer support or advice.

• Read more